Stroke changes lives in an instant. Recovery, however big or small, takes time. It's important for healthcare professionals, such as doctors, physiotherapists and speech and language therapists, to talk to stroke survivors and their families about their recovery.
The right information, at the right time, can give hope and enable people to understand what their life after stroke might be like. Unfortunately, people often tell us that they didn't get the information they needed to help them plan and adapt.
We're funding Louisa Burton at the University of Leeds to work with stroke survivors, carers and stroke professionals to develop training and support for staff so they can discuss recovery in a way that meets their patients' needs.
'In my work on stroke units, I saw too many patients and their families struggling to have conversations with professionals about the future that were helpful,' said Louisa. 'We want to find out how staff can talk about recovery at the right times throughout a person's stay in hospital. So when it's time for them to continue their journey of recovery, and adapt to the effects of their stroke at home, they don't feel disappointed or distressed.
'Some stroke survivors and their families expect life to go back to how it was, whereas for healthcare professionals, the meaning of recovery can be different. Professionals can try to assess what a stroke survivor might be able to do in the future. But these predictions aren't set in stone, and staff are sometimes afraid to talk about recovery in case they're wrong.
'In my research, I've found that most patients just want to feel staff are being honest - and to say when they don't know. They want the chance to ask questions, and to focus on the positives, like the things that they can do.
'It's important for professionals to make it clear that recovery is long-term and continues after rehabilitation in hospital. Supporting staff to talk more confidently and effectively about recovery will help stroke survivors and families to better understand and manage the effects of their stroke, feel more hopeful and improve their quality of life.'
Ann and Les' story
Ann Turner has been caring for her husband, Les, since he had two major strokes in 2010. 'I always remember talking with the consultant. He sat me down and said, 'Your husband will be disabled for the rest of his life.' It was a shock at first, but the conversation really brought it home to me and helped me prepare.
'Our main goal was to get Les to be able to come home, rather than go into residential care. We knew that he had to be able to walk around the flat to do that, so the physios worked hard to help Les so he could walk with a tripod stick and a leg brace.'
Thanks to the support Ann and Les received in hospital, they've been able to adapt. 'We moved to a ground floor flat, which is easier for both of us. Life has changed but there's plenty to enjoy.
'We now have two grandsons. The eldest is six, so has only known Les as he is now. He's so helpful when he stays with us. He helps me to get Les dressed and wants to get involved, which is lovely.'
Learn more
Read about the research we fund around the UK.
Stroke News magazine
This article is featured in the winter 2020 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.